rehabilitation of patients living with advanced cancerca cancer j clin 2013;63:295-317. (3) holm, l....

09.09.2014 Liisa Pylkkänen

Rehabilitation of patients living with

advanced cancer

Liisa Pylkkänen

MD, PhD, Adjunct Professor

Chief Medical Officer

Cancer Society of Finland

Co-authors: Minna Salakari, Nina Utrianen,

Raija Nurminen and Tiina Surakka


Presentation is based on published literature and own

experience from CARECA project, and from Pirkanmaa and

Karina Hospices

CARECA - Cancer Rehabilitation and Pathway Care Projects

The project “Careca” (www.lssy.fi) supervised by Dr R Nurminen in based on

collaboration with Cancer Society of South Western Finland and Turku University

of Applied Sciences. The project is scheduled for 2010–2016 and is divided into four

parts:

1) The evaluation and the future of rehabilitation of cancer patients (2010–2015)

2) The quality of life of cancer patients during the hole cancer pathway (2011–2016)

3) Peer support in cancer rehabilitation (2012 – 2016)

4) Development of palliative care (2012 – 2016).

Thus far 17 master theses, one doctoral dissertation (to be published in the autumn

2014), other 15 scientific and professional publications, and 15 posters at ECRS in

2012 and 2014 has been published.

At Pirkanmaa Hospice rehabilitation is integrated in the care of

all patients (personal communications with Dr T Surakka)

http://www.lssy.fi/


INTRODUCTION

Patients with advanced cancer have several symptoms and

impairments

– disease-related (↑ with advancing disease)

– treatment-related (↑ with increasing number of treatments)

– distress and depression is often worsening symptoms

Common physical symptoms: pain (up to 70-80%); dyspnea (up to

60-70%); fatigue (up to 75%); neurological impairment (cancer-induced,

treatment-induced); symptoms due to bone metastases (pain,

pathological fractures, disability); lymphedema, etc.

Reseach has shown the need for rehabilitation in patients with

advanced disease, but its underuse as well

Reasons for underuse of rehabilitation in this patient population

– lack of knowlegde about the benefits of rehabilitation

– lack of referrals (by oncologists)

– lack of resources etc.


Rehabilitation and advanced

cancer – own experiences

By offering information and peer support, it is possible to help the

rehabilitee to accept cancer as a part of life; improve coping-skills;

enhance the sense of coherence and empowerment.

The goal of rehabilitation is to help persons to regain control over many

aspects of their lives and remain as independent and productive as

possible.

Rehabilitation can improve the quality of life for people with cancer and

their families by:

– improving physical, social and psychological strength

– helping the person with cancer to become more independent and

less reliant on the caregivers

– helping the person with cancer to adjust to actual, perceived, and

potential losses due to advanced cancer

– lowering the number of hospitalizations.


Goals for rehabilitation in patients with

advanced disease

In patients living with cancer as chronic condition, the

rehabilitation goals are usually different than in patients after

treatment with curative intent.

The prognosis should be taken into account (e.g., metastatic

breast cancer vs. metastatic pancreatic cancer)

Relevant goals for rehabilitation in this patient population are e.g.,

– improvement of function

– improvement of quality of life

– reduction of the burden of care.

The goals and means should be individually tailored and re-

evaluated often enough.


Multidisplinary approach is needed in

patients with advanced cancer

We need to take care of physical, psychosocial, cultural, and existential

and spiritual needs.

Individual preferences and needs are to be taken into account.

Different modalities to be utilized, including

– Physical therapy (dyspnea, pain, mobility, lymphedema)

– Excersice therapy

– Occupational therapy

– Psychosocial support/psychoterapy

– Use of cultural elements (art, painting, literature, music etc.)

– Peer support

– Etc.

The most investigated field is the physical rehabilitation.


Some research results and own

experiences on rehabilitation in

patients with advanced cancer


Physical rehabilitation and advanced cancer

Physical exercise is a suitable approach for maintaining physical

capacity in cancer patients with incurable and advanced disease (1).

A leading cause of emotional distress in cancer survivors is physical

disability (2).

Comorbidities are statistically significant associated with the

rehabilitation needs. Moderate to severe comorbidity has shown to be

associated with a need of rehabilitation in the emotional, family-oriented

and financial areas, as well as participation in physical-related

rehabilitation activities. (3) (1) Oldervoll M. et al. Physical Exercise for Cancer Patients with Advanced Disease: A

Randomized Controlled Trial. The Oncologist 2011; 16:1649-1657.

(2) Silver JK et al., Impairment-driven cancer rehabilitation: an essential component of

quality of care and survivorship. CA Cancer J Clin 2013;63:295-317.

(3) Holm, L. et al. 2014. Influence of comorbidity on cancer patients' rehabilitation needs,

participation in rehabilitation activities and unmet needs: a population-based cohort

study. Support Care Cancer 2014;22:2095-105.


Excercise interventions and advanced cancer

(Systematic review by Beaton et al., 2009)

Heterogeneity:

– Interventions used very variable (yoga, aerobic exercise, resistance exercise,

multidimensional programmes)

– Different intervention periods, inconsistent outcome measures etc.

Key findings:

– The evidence shows the enhancement of QoL (level A).

– Support for exercise effects in improving physical performance (level C)

– Important to communicate this benefit to the patients and relatives.

– Important to clarify the goals: To maintain or even improve the function in order

to retain independence with mobility and transfer.

Conclusions:

– There is no aggreement on optimal exercise parameters.

– There is limited evidence concerning the safety of exercise.

– Future research (large-scale RCTs) could identify optimal and safe exercise

parameters.

Beaton R et al. Effect of exercise interventions on persons with metastatic

cancer: A systematic review. Physiother. Can 2009;61:141-153.


Physical exercise for cancer patients wit advanced disease:

A Randomized controlled trial (Oldervoll et al., 2011)

Cancer patients (n=231) with life expectancy ≤ 2 years were randomized

to physical exercise group (PEG; n=121) and a control usual care group

PEG group exercised under supervision 60 min twice a week for 8

weeks.

Primary outcome was physical fatique; secondary outcome was

physical performance measured by Shuttle Walk Test (SWT) and hand

grip strenght (HGS) test.

No significant effect was observed in physical fatique, but physical

performance was significantly improved after 8 weeks of physical

exercise.

Conclusion: Physical exercise might be suitable approach for

maintaining physical capacity in patients with advanced disease.

Oldervoll LM et al., The Oncologist 2011;16:1649-1657.


Own experiences on rehabilitation at Cancer Society

of Finland (CSF) in patients with advanced disease

CSF is organising approximately 45-50 rehabilitation courses

including 800 – 900 participants each year.

Kela (Social Insurance Institution of Finland) is also organising

cancer patient rehabilitation for about the same number of

patients (with focus on patients ≤ 65 years).

Only minority of courses organized by CSF (and none by Kela)

target patients with advanced disease (4-5 courses/year).

Key forms of support during the course for patients with

advanced disease are cognitive and psychosocial support and

various forms of peer support.

In addition, there are peer-support groups and internet-based

groups for patients with advanced disease.




The structure of the adaptation training course (appr.5 days):

- coping with everyday life

- physical training

- health

- sexuality

- psychological wellbeing

- social wellbeing.

Multidisciplinary team is always involved (oncologist, oncology

nurse, palliative care nurse, physiotherapist, rehabilitation nurse,

dietician, psychologist, music therapist, sexuality councellor,

voluntary workers, etc.).

Small group of patients and their relatives or loved ones (appr.

10 subjects) to facilitate peer support.




Participants usually report receiving benefits from rehabilitation.

However, many patients still report that they have not been

offered rehabilitation they would have needed.

Difficulties and problems experienced:

– Advancing disease may prevent the planned participation.

– Deteriorating physical condition may be a limiting factor

during the rehabilitation course.

– Peer support may be difficult if there are patients with

different status of the disease.

Future plans: smaller and more flexible groups; outpatients

rehabilitation interventions closer to home; better integration of

families and other loved-ones in the rehabilitation process;

continuous patient education instead of fixed courses.


Rehabilitation in palliative care

Integration of rehabilitation into palliative care and continued

efforts to increase clinicians´ awareness and acceptance of

rehabilitation benefits and expertise are needed (1).

For patients with advanced cancer, exercise can decrease

anxiety, stress and depression, while improving levels of pain,

fatigue, shortness of breath, constipation, and insomnia (2).

Rehabilitation can even have positive effects on morbidity and

mortality. Patient should be encouraged to participate in

rehabilitation programs. (3)

(1) Jones et al. 2013. Journal of Pain and Symptom Management 2014: 46: 315–325.

(2) Albrect T and Taylor A. Clin J Oncol Nursing 2012;16: 293-300.

(3) Eyigor and Akdeniz. World J Clin Oncol 2014;5:554-9.


Mobility and physical therapy in

palliative care – own experiences

Moving is one of persons basic needs and basic rights.

Dependence of other persons is many times the most frightening

and also the most important reason for a person to wish to die.

It is important to focus on the existing resources.

Physical activity can alleviate pain in some occasions.

The ability and possibility to do things yourself is very important

to be able to keep your dignity.

”It is important NOT to do things for the patients, but together

with the patient.”


” I was outside yesterday a for a couple of hours . It would be so nice to go out again... ”

” It was so sweet, I enjoy a lot to be able to go outside.”

” It is so much easier to breathe outside.”

Special thanks to Pirkanmaa Hospice


”In the beginning it was awfull to be

helped by other persons”…

”Indeed, now I can be proud, that I

can manage all my daily activities

here without help.”

”It is very important to be able to

keep your dignity.”

Special thanks to Pirkanmaa Hospice

”I always say to them that will keep trying as long as I can. For me this means independence.”

Maintenance or even improving the function?


Rehabilitation of patients in palliative

care – own experiences

In addition to physical and psychosocial rehabilitation, patients in

palliative care setting benefit from different other forms of

rehabilitation.

Spiritual and social needs can be met with certain kind of focus

group meetings.

→ Patients, nursing staff, family members and volunteer

workers can share thoughts of hope – e.g., hope for good

care and continuing good life.

Our experience on helping the patients to focus on existing life

strongly includes rehabilitation and occupational therapy as part

of good palliative care.


Depression, anxiety, physical, mental and

emotional changes of patients living with

advanced cancer

Results and experiences based on CARECA Project

Foto Janne Nurminen


DEPRESSION

Depression is a distressful disorder characterized by feelings

such as sadness, apathy, guilt, hopelessness, and irritability that

persists consistently for more than two weeks and negatively

affects one’s daily activities and relationships.

Depression may occur near the time of diagnosis or anytime

during or after treatment.

The diagnosis of depression is based on mood-related,

cognitive, physical, and behavioral symptoms.

As many as 15% to 25% of people with advanced cancer

experience depression.


ANXIETY AND FEAR

Many people with advanced cancer experience anxiety, with

fears triggered by the uncertainties related to a advanced cancer

Fear of death is often the primary concern

Many patients have fears for

– pain

– progression of disease

– treatment-related adverse effects

– loosing control over future life decisions

– becoming dependent on others

– having changes in relationships dynamics to others


Depression, anxiety, mental and emotional

changes

We may overlook these mental and emotional

symptoms while focusing e.g., on the physical

effects of cancer and cancer treatment.

For example

People with untreated depression or anxiety may be less likely to

continue healthy habits and take their cancer medication because of

fatigue or lack of motivation.

They may also withdraw from family or other social support systems,

which means they won’t ask for the needed emotional and financial

support to cope with cancer.

This in turn may result in increasing stress and feelings of despair.

Foto Janne Nurminen


Physical changes affect your body

image and mood

Both cancer and cancer treatments may change your physical

appearance.

There may be severe changes in your body image due to

advanced cancer, such as

– hair loss, weight gain or weight loss

– scars from surgery

– rash, typically a result of drug therapies

– physical changes due to surgery (mastectomy, amputation)

– need for a stoma, catheters etc.

– fatigue or loss of energy; due to severe fatigue you can give

up activities that you once enjoyed.


Mental and emotional changes associated with

advanced cancer

Depending on the seriousness of the illness and the prognosis you

may need to change your plans and realize the possibility of dying

Advanced disease is frightening and has a profound effect on how view your life.

It is not unusual to experience many different emotions; sometimes it may be difficult

to figure out exactly what you are feeling.

Many people with advanced cancer describe feelings such as: anger; a feeling of lack

of control; sadness; fear; frustration; guilt, a change in the way you think about

yourself and the future.

Self-Image and Cancer

A diagnosis of advanced cancer is always unwelcome and causes many changes in your

life. All changes, however big or small they appear to others, affect how you see yourself

and how you relate to others.


As an example of special techniques:

Music therapy/voice control

Music therapy ≠ listening and enjoying music.

Music/voice therapy is possible in all stages of palliative care.

Music therapist is a member of a palliative care team.

Music/voice therapy can alleviate physical and psychological

anxiety. It may help the patient to find words.

Music experience/music therapy can also alleviate pain (opioids).

The most common technique used is ”toning”, which means

singing of long vocals (you can have effects on heart rythm and

breathing).

”Voice as a bridge to death” Dileo C. 2011. Therapeutic use of voice with imminently dying patient. In: Baker F& Uhling

S (eds.) Voicework in Music Therapy. Research and Practice. London/Philadelphia: Jessica

Kingsley Publishers, pp.3213-3230.

Personal communication with music therapist Virve Niemeläinen, Cancer Society of South

Western Finland, Turku, Finland, is acknowledged.


Patients´experiences from music therapy

– ”What a surprise!” ”This is refreshing and relaxing”

– ”It is so wonderful that I still can experience this in my life”

– ”This helped me to forget my poor condition for a short

moment”

– ”During the therapy I remember items that I have not been

able to remember for a very long time”

– ”When you sing, I feel fibrations in my legs” (says a patient

who can not move any more). ”It is a similar feeling that I feel

when my pain medication is starting to help.”

Personal communication with music therapist Virve Niemeläinen at Cancer

Society of South Western Finland,Turku, Finland, is acknowledged.


Other special items that need to be taken into account

in rehabilitation of patients with advanced cancer

Family life and how to talk about advanced cancer

Relationships with friends and relatives

Special needs related to childhood and cancer

Advanced cancer and workplace discrimination

Advanced cancer and the insurance problems (e.g.,

health insurance and travel insurance)

Sexuality and advanced cancer

– Maintenance of sexual and reproductive health

– Sexual problems and finding support for sexual

and reproductive concerns

– Being single with advanced cancer and sexual

relationships

Foto Janne Nurminen


Some thoughts for the future...

Institute of National Health and Wellfare (THL) published in May 2014

the 2nd part of national Cancer Control Plan in Finland including

recommendations on prevention, early detection, rehabilitation, and

research and education.

The key recommendations on rehabilitation included the following:

– Rehabilitation should be individually tailored (based on screening).

– Rehabilitation should be available during the whole cancer

continuum (from prehabilitation to palliative care).

– Each patient should have an individual rehabilitation plan.

CSF performed in 2013 – 2014 a survey on the knowlegde and

experience of rehabilitation. The results revealed that patients did not

know much about rehabilitation. There were spesific information needs

for nurses and doctors as well. Rehabilitation plan was done only for

very few patients (less that 10%).

Much work is thus needed!


Conclusions

In parallel with increasing cancer incidence and improved treatment

options, there are more and more patients living with cancer as a

chronic condition.

Rehabilitation is needed in all steps of cancer continuum, also in

patients living with advanced disease.

Goals in patients living with cancer as a chronic condition are usually

different from those in patients after curative treatment and need to be

individually tailored.

In general, the same rehabilitation methods as used in patients after

curative treatment can be utilized also in patients living with advanced

disease.

The most investigated area is physical rehabilitation, which has shown

to improve physical performance. More data is needed particularly on

different methods of rehabilitation and adverse effects.

Rehabilitation is effective also in patients with advanced disease

It can prevent disability and improve QoL.

rehabilitation of patients living with advanced cancerca cancer j clin 2013;63:295-317. (3) holm, l....

Documents